What are the odds that two sisters would both have with the same type of lung cancer? Slim. Even if they are identical twins or identical mirror twins like Leni Grant and Lita Brown, from Gray. Mirror twins are identical twins with opposite features — reflections of each other. For instance, Lita is right-handed and Leni, left-handed. It happens because the fertilized egg splits later than usual.
When it comes to their lung cancers though, there is no mirroring. Leni and Lita, who are in their early 50s, have an uncommon form called carcinoid tumors and they each have nodules in both of their lungs. It’s not clear what causes carcinoid tumors, but the twin sisters have donated their DNA for research, hoping that doing so might provide important clues. “If we can help out in any way, we will,” they say.
Leni was diagnosed in 2006. She went to the emergency room because of shortness of breath and pain in her chest and between her shoulder blades. A chest x-ray picked up a large nodule. She ended up having the middle lobe of her right lung removed. We have five lobes in our lungs, three on the right and two on the left. A person can survive with just two, although it will be harder to breathe. Surgery is the primary way to treat carcinoids, but in some cases, medications that either block the cancer cells from secreting hormones or boost the immune system are also used.
Lita, who likes to boast that she is 10 minutes older than her sister, was diagnosed in 2007. Looking back, she believes she had symptoms at least three or four years earlier. She kept getting bronchial infections and then came down with a severe case of pneumonia. While Leni’s carcinoid tumors are stable, Lita’s have increased in size. She’s already had her right lower lobe removed and is scheduled to have her left upper lobe removed in September.
The sisters have a strong and loving support network that includes family, friends and strangers, but their deepest support comes from each other. “My sister Lita is the one who has been struggling really hard the last two years,” say Leni. “God willing, I’ve been given the strength to help her through her sickness. It’s a constant journey. Even though we laugh and stay jolly we still have rough days with symptoms every day. We’ll wake up with morning sickness, a metallic taste in the mouth, joint pain, fatigue and other pains. Sometimes it gets really tiring, but we keep a very positive attitude.”
I interviewed Leni and Lita over the phone and their positive attitude was obvious the entire time. They were always laughing. And something else that was apparent is what I can only guess has to do with being twins — they often talked for each other or finished each other’s sentences. It was almost as if there was always an echo. They told me they called themselves surround sound. It made perfect sense!
What also makes perfect sense is that they’re the kind of people who try to give back and do as much community service as they can. Even when they don’t feel well. That’s why they’ve both signed up as volunteers for this year’s Tri for a Cure triathlon. The Tri is one of the Maine Cancer Foundation’s major fundraisers. Money raised helps fund cancer research, education and patient support programs. 100 percent of the funds stay in Maine.
If they could, Leni and Lita would participate in the triathlon in a heartbeat. But they can’t, so instead, they’ll be at one of the water stations. “I can get around pretty good and I know that I can get the water to the runners,” says Leni, “but Lita can’t right now. We found a way for her to be with me at the same location doing something she enjoys that is also helpful to others. She’s going to sit and refill the water.”
“As long as there’s a chair available, ”chimes in Lita, “I’m there to help out and do what I can.”
Being around positive people and in positive situations as much as possible helps both sisters feel a lot better. So too, does sharing their story in the hopes that people will come away with a better understanding of what it’s like to have cancer.
“I want people to understand about the laughter and love that comes out of cancer,” says Lita. “The love is incredible, from people you don’t even know. You tell them you have cancer and they are so compassionate and you can feel that love. I wasn’t lacking love, I have lots of love, but with this awful disease I’ve had more love than I’ve ever felt in my life.
“What I’d like people to know,” Leni says, “ is that we all go through some kind of diversity in life and even more than this. I think it’s important to look at the things that you can do and not the things you can’t. If people look at us with lung cancer and see that we’re still trying … well, I guess we’re just like everybody else, trying to make a difference in the world, trying to make it a better place.”
If you’re at the Tri for a Cure July 20th and see the two sisters at the water station, be sure to give them a little love. It will undoubtedly come right back at you and make a difference in your world.